- Navigating the transitions is complex and resources are available to help you. It’s not fair to you to take this all on yourself.
- Always have a notebook and take notes.
- Understand the roles of care team members, and hospital resources, and how they can help.
- Expect the unexpected such as multiple hospital transfers, surgeries, treatment plans, setbacks, and rehabilitation.
- Self-care is critical, give yourself grace and permission to rest.
How do I make sense of these unfamiliar situations?
Navigating the transitions between the initial cardiac arrest, hospitalizations, surgeries, treatments, rehabilitation, and home care can be very stressful. In this article, we will discuss the various possible transition stages and resources, as well as provide insight to help you, the co-survivor, navigate this difficult time.
As a co-survivor, it is normal to find yourself navigating many unfamiliar stages as your loved one journeys through their recovery. You may find yourself in disbelief, unclear on what to do. This may have started from the moment you got the first phone call or witnessed the cardiac arrest itself and lasted all the way through your loved one’s stay in an intensive care unit (ICU), potentially in a coma and/or on a ventilator. Then you may find yourself waiting to better understand the cause of the cardiac arrest and how the days and nights ahead of you will look. You may ask yourself how you can navigate the healthcare system that is working hard to ensure a successful outcome for your loved one.
You are overwhelmed, sleep deprived, trying to make sense of everything, and frequently saying to yourself, “Help me, I can’t do this alone!” You freeze and feel like you can’t make any decisions.
The journey could be very long. The emotional turmoil will stay for a long time and certainly outlast your loved one’s recovery journey. This is normal. It is the acute stress and trauma resulting from cardiac arrest. Sometimes, others expect you to pull it together as your loved one recovers. This is an unreasonable expectation. You should have the freedom to express your real emotions and process them as you need to. If you need to give yourself some space from those that have these unreasonable expectations of you, that is okay. Remember, things will not be back to normal. You will eventually arrive at a new normal.
The initial phone call – a state of shock and disbelief
You either witness your loved one dying in front of you or receive a very unexpected phone call that your loved one is on life support in the ICU. You may have just spoken to or seen them that morning. You try to get information from this stranger (if it occurred on the street), or a first responder or hospital care team member who cannot tell you for sure what is wrong. Some may feel overcome by doom and dread and fall to their knees crying hysterically, wondering if they will ever see their loved one again. Others might react to bad news with numbness, staying calm, and thinking about the tasks and actions that need to be taken. The pain is real in both reactions.
Co-survivor insight: “I am the one that holds things together at home and cares for my family members. I was in so much shock that I couldn’t think clearly. I tried to use the phone to contact someone who can help but couldn’t remember the number or use keys to lock the door. I was shaking and couldn’t get my emotions to calm down. I was frozen and couldn’t figure out how to get myself to the hospital.”
You are not alone in feeling this way. Give yourself permission to feel this way without judging yourself. Try to take slow, deep breaths.
Intensive care units (ICU)
You arrive at the hospital and proceed to the ICU to see your loved one. You may find it very frightening to see all the wires and equipment hooked up to your loved one. This is a normal response. You may have many questions and feel eager to hear that your loved one will be fine, but it seems that no one is there to console you at this time.
Co-survivor insight: “ I dropped to my knees upon entry into the room in shock of seeing him on life support. I was crying and couldn’t catch my breath wondering, “What is this I’m seeing? How do I get answers? Who should I tell that he is in this state?” I wanted answers and was confused about who [could] help get those for me. Where do I begin?”
Ask yourself, “Do I know anyone in the medical field that can be a support?” This person, if close, could act as a liaison between you and the medical care team. The point is that you don’t have to do this by yourself. Give yourself grace. This may be too much to take on at once.
Understanding care team roles as you navigate the hospital
It is important for you to understand the roles of those involved in caring for your loved one. You may find yourself having the wrong expectations of someone’s responsibility because of a lack of understanding.
For example, you may expect your case manager to be a liaison between you and your loved one’s medical team, which is not their role. This could lead to frustration and make you feel more overwhelmed and anxious. This confusion is very normal and to be expected. The intent of the following is to help you understand roles more effectively.
For medical information:
- Physicians: The primary medical care team will include ICU physicians (also known as intensivists); cardiac electrophysiologists specializing in arrhythmias (electrical problems in the heart); cardiologists who focus on the arteries, valves, and effectiveness of blood flow and circulation; and neurologists who focus on brain function.
- Nurses: Your loved one will have many nurses caring for them. In the ICU, a dedicated nurse will be assigned to your loved one. They are responsible for two patients at a time and switch shifts at 6 PM and 6 AM at most places.
For logistical support:
- Nurse manager: Every ICU has a nurse manager who comes by to make sure you have everything you need. They are the first person you would reach out to in case of any concerns with your loved one’s care.
- Patient advocate: Some hospitals have designated patient advocates for sick patients with complex care and their families. They are there to protect the rights, health, and safety of your loved one. They will work with your loved one’s medical care team and medical or nursing administrators to ensure the highest level of care. Sometimes, there is a fee to hire an independent patient advocate. You should not take on the responsibility of finding one during this difficult and chaotic time. Assign that responsibility to a close family member or friend who is able and willing to assist you.
An example of how a patient advocate could assist: Say your loved one is being taken off the ventilator. You notice unusual behaviors and are told by the medical care team it could be due to a lack of blood flow to the brain that can occur during cardiac arrest. You panic and worry. At this time, your patient advocate could get more information from the doctors on the next steps and explain it to you in a lay-friendly way. For example: “This behavior is normal and to be expected when coming out of a medically induced coma. We should be patient and give it a couple weeks to better understand the gravity of the situation. There are tests that the medical care team is planning to do.”
- Hospital case manager: A hospital case manager is hired by the hospital to assist in the discharge process and timeline in collaboration with the medical care team. One of their key roles is to assess the patient’s health insurance plan and work with the insurer and multiple providers to ensure that the best care is delivered with the least financial burden. If you need to transfer your loved one to another hospital for advanced care, the case manager helps transfer documents and ensure optimal sign-out.
An example of how a case manager could assist: Say you are told your loved one is being released the next day, but you feel they are not ready to be released. You may have many questions and concerns about this decision and feel that you are not prepared to have them released. At this time, your case manager could get involved to help resolve the conflict and put a hold on the discharge plans.
- Hospital social worker: Social workers are uniquely qualified to assess and address many complex circumstances and can clarify potential misperceptions, enhance communication between you and your other family members, and convey your needs to the medical care team. This not only helps improve the quality of life for your loved one and you, but may also reduce the likelihood of decisional conflicts. In the absence of a patient advocate, social workers could be responsible for educating patients and families about illnesses and treatment plans, conducting psychosocial assessments to identify mental or emotional distress, counseling those in crisis or experiencing distress, and connecting patients and their families with necessary resources. An example of how a social worker could assist: Say you have a family member that needs to travel from abroad to see your loved one in the ICU and needs medical records to demonstrate an emergency to the embassy. Or, say you need emotional support from a hospital therapist. In both situations, a social worker could connect you with the right hospital resources.
- Chaplains: The chapels are a place where you can have quiet meditation. A hospital chaplain offers spiritual guidance and pastoral care to patients and their families. As representatives of religious traditions, chaplains in hospitals and medical centers use the insights and principles of psychology, religion, spirituality, and theology. Non-denominational chapels are standard in most hospitals. You can ask to see a chaplain at any time. In some hospitals, they may even be a part of your initial support when your loved one is admitted.
- Family and friends: Communicate openly about your needs as you journey through this process. Your family and friends can be a strong support system for you by arranging meals, providing group updates, and relieving you at the bedside so you can get some sleep, wash up, etc. You may find yourself unable to leave your loved one’s side, yet rest will be more helpful for both you and them.
- Your contribution to your loved one’s orientation to the hospital: As they recover and are removed from the medically induced coma and ventilator, you will notice some behavioral changes, such as frequently repeating the same questions, likely due to confusion or memory loss. A great tool to consider is a whiteboard. Keep it simple, and do not expect much at first. For example, have them write down what they can, and also write down information such as, “I spoke to my supervisor at work, and they understand I can’t return to work tomorrow.” This way, next time they don’t remember asking this question, you can show them what they wrote on the whiteboard, and it will aid in their recovery. Texting is also a great way for them to go back and review who they spoke with and what was said.
Cardiac care & step-down units
When your loved one successfully comes out of their coma and is medically more stable, they may be moved to a step-down unit, which is for patients that require less critical care than an ICU and therefore has a higher patient-to-nurse ratio. You may have concerns such as:
- Is this too soon?
- They aren’t being monitored as often. What if an important change is missed?
- They are acting differently. Will it change? Can I help them? Their memory, repetitive speaking, and facial expressions and movements have changed.
- Where do we go from here?
- What is the diagnosis and treatment plan?
New situations may also arise:
- You may learn that various procedures are needed to help your loved one. This could include swallowing studies, neurological tests, angiography of their heart or stents to open the arteries, open heart surgery, defibrillator implants, and many others. They can be frightening and difficult to understand.
- Infections and other mechanical complications can arise from being intubated, including pneumonia, which can be treated.
- You may find they need to transfer your loved one to a different hospital with advanced care for further treatments. This is normal and will help your loved one in their journey to recovery.
During this time, be sure to access your resources and repeatedly revisit and re-communicate your needs. Take time for rest and self-care through activities such as meditation, calming music, deep breathing, and therapy.
Transitioning to rehabilitation
There are a variety of rehabilitation options. These forms of therapy usually start in the hospital and then continue at home as an outpatient or in a physical rehabilitation facility or nursing home. Rehabilitation is an important component of the overall successful recovery of you and your loved one. Understanding the role of each type of therapy is helpful in knowing what to expect going forward:
- Physical therapy: Focuses on improving the patient’s ability to move their body. Inpatient physical therapy, unlike outpatient, requires patients to be admitted to a facility such as a hospital or long-term acute care, nursing home, or rehabilitation center.
- Occupational therapy: Focuses on improving your loved one’s ability to perform activities of daily living
- Speech therapy: Focuses on your loved one’s speech-language, voice, and swallowing dysfunction
- Cognitive therapy: Focuses on your loved one’s cognitive function, such as attention, memory, reasoning, problem solving, and executive function
- Cardiac rehab: A customized outpatient program of exercise and education. The cardiac rehab program will help your loved one improve their health and recover from their cardiac arrest. It includes exercise, emotional support, and education about lifestyle changes such as eating a heart-healthy diet, sleeping well, maintaining a healthy weight, etc. It’s a safe place for your loved one to exercise in a monitored setting. The goals of cardiac rehabilitation include: establishing a plan to help regain strength, preventing your loved one’s condition from worsening, reducing risk of future heart problems, and improving your loved one’s health and quality of life. It will help you, as the co-survivor, feel more confident about your loved one’s condition and abilities at home. Knowing your loved one was monitored successfully during cardiac rehab can help reduce fear and anxiety.
Recovering at home
Bringing your loved one home can be scary. That is a normal feeling to have. You may feel insecure about providing care in the best possible way and scared of a recurrence and death. You may find yourself unable to sleep, unable to leave their side, and checking on them constantly to make sure they are okay. Ask for help from other close family members or friends to watch your loved one so you can rest, go for walks, etc. Those who are eligible for home health care services could use their support for your loved one’s care needs.
Remember that you will also be receiving phone calls from home care agencies, home health equipment providers (if needed), pharmacists, doctors, insurance companies, etc. This can be incredibly challenging keeping in mind that you are also recovering from the stress and trauma caused by your loved one’s event. Communicate your need for help to your family and friends. It can be too much to take on by yourself. It is normal to need and want help.
General tips to organize yourself:
- Stick a page on your refrigerator with all the contact numbers and who to call for what. This should be included in your discharge instructions.
- Keep a central notebook documenting medical team notes, updates, prescriptions, care plans, etc. This will be a helpful resource during the initial journey and beyond.
- It is quite common to misunderstand what is being said during family discussions with the medical care team. It can be confusing. See if you could have at least two members of your support system present (one taking notes and the other listening and responding). It will lead to better understanding.
Thank you to our contributors
Debbie Medina & Cindy Marchionda
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